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PRACTICE PANEL Older people's services - Leeds social services and primary care trust

 

Case study

 

The name of the service user has been changed

 

SITUATION: Bill Thompson, 64, was diagnosed with Parkinson’s disease five years ago. His wife died two years ago. He now lives alone but is supported by a care package, including home care, meals on wheels twice weekly, day care and respite care. His daughter lives 40 miles away but tries to visit him every fortnight.

 

PROBLEM : Recently Bill’s mobility has deteriorated significantly.  Everybody involved with him – his daughter, care staff, neighbours and friends – are expressing concerns that he remains at home. Bill, a proud man, is adamant that he wishes to stay (and die) at home and becomes angry and agitated when residential care is discussed. However, his care package does not meet his needs. He falls frequently but refuses to be admitted into hospital when ambulance crews call to lift him. His slow mobility prevents him reaching the commode in time but he removes his incontinence pad during the night so he is soaking wet when the home carers arrive each morning. Bill also spends hours chopping wood during the night in his backyard, even though he has gas central heating and a gas fire in the front room where he sleeps. A fire guard has been bought for his wood fire but Bill removes this at times and spends hours lighting the fire. Bill’s social worker feels that supporting his right to self-determination is not easy when faced with such strong opposition.

 

PANEL RESPONSES

 

MICK RYAN

As Bill wants to remain at home, it is important to explore the deterioration in his level of functioning. A thorough reassessment of his social care needs is required and this can be compared with any baseline assessment information that already exists from previous assessments. It is also important that the current progression of his Parkinson’s disease is considered by doctors. If Bill is not under a neurologist, with his permission he should be referred. If he is, a review would be helpful in determining the effect the illness is having on him.

The disease may be affecting his cognitive functioning. Given the known links between Parkinson’s and dementia it may help to seek a psychiatric opinion. There may be depression issues. Bill has suffered a number of losses, chiefly the death of his wife and his diminishing independence through Parkinson’s disease. He is a proud man and may be struggling to come to terms with his increasingly dependent position. It is important here for the worker to listen to what Bill is saying about these issues and to help him come to terms with his reality. Bill’s expressed wishes are important and should be valued.

There are risks to his current situation and these too need to be evaluated and the concern of family and friends acknowledged. The open fire is an obvious risk and Bill’s preoccupation with that activity needs to explored with him. Does it provide a focus for him? Could this focus be replaced with a less harmful activity?

Connected to risk is the issue of capacity. Bill may no longer be able to make informed decisions and this would influence any future decisions about his care and his wishes.

His mobility problems are exacerbating the continence difficulties and there may be practical solutions to this by moving his commode. It would also be useful to enlist the help of an incontinence adviser.

This assessment should inform a new care plan to address Bill’s needs. The aim would be for the multi-disciplinary elements to work in partnership to provide an effective care package so that he can remain at his own home for as long as possible.

 

SUE ORCHARD

Within our area the primary care trust has enhanced the intermediate care team to include a rapid response capability to prevent unnecessary admissions to hospital.

As this is now an NHS priority a pathway has been developed with the ambulance service to direct anyone who has fallen, but who does not need to be admitted to hospital yet requires some support for a short period, to the rapid response team.

If Bill were to be referred, a falls assessment, which has been developed city-wide, would be undertaken and the most appropriate course of treatment instigated. This could be a referral to the falls clinic to determine the reason why Bill is falling. As he also suffers from Parkinson’s disease, there would be a re-assessment of his medication, as this could be a major cause of his continual falling.

At the same time multi-disciplinary assessments would be undertaken to determine the effects of his poor mobility. An exercise programme may be introduced to help improve his mobility and balance.

After all this Bill may be referred on to an outpatient programme to continue the exercises and to receive information on how to prevent future falls.

Bill may also be referred to the advanced specialist practitioners (chronic disease case managers) at the primary care trust, who would monitor Bill regularly and encourage him to recognise his problems and to contact his specialist practitioner should he feel that he is regressing. The intermediate care team would also re-assess his continence needs.

During this time Bill’s home carers would continue to liaise closely with carers. Home carers would be able to provide information on Bill’s abilities before his recent deterioration. His home care package may need to be increased.

A referral would also be made to the community psychiatric nurse to assess why Bill had this need to chop wood and light his fire when he has adequate heating.

Bill is a reasonably young man whose problems need to be sorted out and monitored in the future. All of this would need his co-operation.

 

USER VIEW

This is a difficult situation as it has reached the stage where even the extensive care package in place is not supporting Bill adequately. His behaviour seems to endanger his own health and may be a fire hazard to nearby buildings, write members of Knowsley Older People’s Voice and other service users. 

It is clear that Bill has had a lot to cope with in recent years with the death of his wife and living with Parkinson’s disease. One concern is that attempting to force him into any changes in his lifestyle may be detrimental. He may even have severe depression, given all he has lived through.

What may help is an assessment from a psychiatrist or a geriatrician to determine whether he has the symptoms of early onset dementia. This will also give an indication of Bill’s capacity to make decisions on his own future.  

In the meantime, Bill’s care package should be adjusted so that he can live independently. It may be possible to offer him the option to increase his care package to four visits a day and daily meals on wheels. It may be that the family needs to speak to him about considering private care, perhaps with care assistants staying the night.

There are a range of measures that can be offered to Bill to help prevent his frequent falls. These could include appropriate footwear, handrails and a visit from a representative of the falls prevention team.

Bill’s habit of chopping wood and using an open fire within his property could be addressed if a fire brigade safety and prevention officer spoke to him. It might be that a more authoritative figure may have the desired effect.

Further to this it may be that Bill has concerns over using the central heating and gas fires. These could be linked to fears about his ability to pay fuel bills or even whether he knows how to operate the central heating system.

Bill’s sleep patterns seem to be causing him difficulties and it could be that this is a side effect of any medication he is taking. It may be worth considering reviewing his medication, perhaps when he attends respite care.  

In conclusion, for Bill, his home is where he wants to be and measures should be provided to enable him to remain there.

Knowsley Older People’s Voice is a self-advocacy group in Merseyside. Additional comments were provided by members of the Aging Well Group, Kirkby, and service users from St Mary’s Day Care Centre in Halewood, Merseyside